The Power of Love, Part 1
Recently I’ve begun to get involved with clinical trials, by learning more about them and trying to participate in a trial or two myself. I feel a bit embarrassed that it’s taken me so long to get educated about what they are and how they work, but better late than never, right?
My introduction to clinical trials
My introduction, or “breakthrough” into the clinical trial world began this past summer when a friend recommended that I become a Breakthrough Crew Ambassador with Clara Health. Clara Health is a patient-centered company that exists to help people access breakthrough clinical trials that could lead to more effective treatments for patients and even cures for diseases.
Eager to get started, I signed up for a clinical trial that was listed on Clara’s website for patients suffering from dry eyes from Sjögren’s Syndrome, which I have. I thought I might as well give it a try since the study wasn’t too far from where I lived and it seemed to pay pretty well. The possibility of my constantly dry eyes being helped with maybe a chance that I could wear my contact lenses again was another motivator.
Unfortunately, after some follow-up questions about my health, I found out that I did not qualify for the study. One requirement was that if I had RA, it needed to be inactive or in remission. My RA was definitely not in remission. But! It was a good experience to see what happens when you initially sign up for a trial via Clara Health. It was easy and went smoothly and I plan to look for other trials that might be a good fit.
Clinical trials and my nana
Learning more about clinical trials, and how important they are, I began to think about my paternal grandmother who suffered terribly from severe RA and psoriasis throughout my childhood and until she passed away in 2003. Italian, dark-haired Nana and I had a lot in common. Yet as a child I never thought we would also someday share the debilitating disease of RA. That’s a bond I never asked for or wanted, yet it was one that united us with a single need: a cure for our disabling inflammation and chronic pain.
Twenty-one summers ago I had just graduated from high school when I received the diagnosis that changed my life forever: Rheumatoid Arthritis (RA). Sitting in the exam room on a chair next to my mother, tears fell down my face and panic rose in my chest as I heard the doctor give me the crushing news. In total shock, I couldn’t believe what I was hearing.
No. No, I can’t have that. I’m too young! Images of twisted, misshapen, and mangled fingers filled my mind. Then the thought that the excruciating pain I had been feeling in my own hands and feet over the past several months would never go away terrified me. How can I live with this forever? I’m only 18.
Twenty years before that sunny yet devastating day in July 1997, my grandmother, Nana, was beginning her own journey of a body and life attacked by chronic inflammation. This forced journey, with its daily assault of swelling and unspeakable pain, was one that I, too, endured, except only as a close observer. As a small child, I grew up knowing that she had very bad arthritis (I didn’t understand what RA was until years later) and seeing her life become increasingly disabled often confused and scared me.
Nana and I were close, as I was to all of my grandparents, although I probably spent the most time with her and my grandfather, Papa. I was at their house all the time, and I often sat in the small, peachy-orange kitchen watching Nana cook, which is something she loved to do. It’s something that became increasingly difficult for her as RA continued to ravage her body, especially her tiny, slender hands that were always whipping up her signature meatballs or veal cutlets or other Italian dishes. The kitchen was her happy place, as was her spot behind her old, black Singer sewing machine in the basement. She had a strong talent for both cooking and sewing, and they brought much joy to her life, yet RA mercilessly stole both of these things from her.
To say that Nana and I are strongly linked would be an understatement. I am her granddaughter, of course, and I have her feisty Italian blood coursing through my own veins. I have her dark hair and eyes. I have her long straight nose, her 5’4″ frame, and her thick unruly hair. And I have her hands. Not only are they small like hers, but they hold her pain, too.
That day in the doctor’s office when I was told that I have RA, I immediately panicked that my hands and feet would become quickly disfigured like my grandmother’s. The thought that this could very well happen, and while still a teenager (unlike Nana being in her 60s when getting the disease) was almost more than I could bear. I cried. A lot. I cried for my own pain and fear and grief, and I cried for Nana. I finally began to understand her suffering.
Nana passed away in March 2003 from stomach cancer at the age of 82. I didn’t get to say goodbye to her in person, but sobbing from a phone booth on a desolate street in Cork, Ireland, late at night. I was studying abroad there for a semester and I wasn’t able to get back home to Minnesota in time to see her before she died. She deteriorated quickly, which surprised us all. That night I wanted so much to be with her in that hospital room, with my parents and sister and family members surrounding her bed, but I could only tell her I love her and say goodbye from that little phone booth.
Even though Nana could no longer speak by this point (this also happened quickly), I know she heard and understood me. Clutching the phone in this surreal moment, an ocean away from her, I told her how much I loved her. I know she knew this, she always knew it, but I also hoped that she knew how much I admired her strength and passion for life despite living with such pain. Struggling and trying to cope with RA myself since my diagnosis, I don’t think I ever really articulated that to her. I wish I would have.
I also wish that the cutting-edge drugs and treatments that were beginning to become available to RA patients in 2003 had been around much earlier. Right before I left for Ireland, I began taking my first biologic medication, twice-weekly injections of Enbrel, because the other medications I had tried since my diagnosis weren’t doing much to stop the relentless progression of the disease.
By age 20 I already had a severely damaged right wrist, with its cartilage and bones eaten and eroded away from RA inflammation. What was next to become permanently damaged? And when? Not knowing what else to do, my rheumatologist put me on Enbrel, and luckily it seemed to work. My fears of collapsed knuckles and grotesquely bent fingers like Nana’s began to subside, as did the mental image I had of being confined to a wheelchair before age 30, or 25, even. What a relief! Something was working. Really working, finally. Thank God for these “miracle drugs!”
But are they really a miracle? Remember, there is no cure for RA and most people do not go into remission once diagnosed with the disease. I certainly didn’t. Instead, I began my own complicated journey of trying to navigate the world of biologics, which was often as confusing and frustrating as RA itself. Read my next article to find out more about how I fared with the ups and downs of finding a treatment plan to help me live the life I wanted to have.